Category: Multiple Sclerosis

In the last post I mentioned that I live in a state that feels like it is situated on the outskirts of Hades. Well it is better than saying the outskirts of He**. It’s not evil here, it is just horribly HOT !!!

It so happens that I used to run at 2:30 in the afternoon 5 days a week. Yeah I was REALLY tan…….and it was HOT. It was okay for a few years. Then all the sudden I would start stumbling. I’d sway and ramble right off the sidewalk and MAN did I slow down. Not a little slower, but my feet were barely coming off the ground. That is probably why I was stumbling….I was tripping over my own feet.

On my long weekend runs (one approx. 13 mile run on Saturdays) I’d get STUPID. No other way to say it. My running route was a straight line. I’d leave from my house, run 3.3 miles in an almost straight line, turn around, run that same 3.3 miles toward home, and then do it all over again….out and back. On the last 3.3 mile leg in…I’d get lost. Not a turn down the wrong road lost, but a “Where the hell am I” lost. I knew I was out for a run and I knew I was on my way home, but for the life of me ‘NOTHING’ looked familiar. I was doing this run with a friend one Saturday and I suddenly had this ‘lost moment’. I told her I didn’t know where I was or how to get home. Being the wonderful person she is, she continued running with me until I figured out where I was.

Of course this was before I was diagnosed.

Other ‘getting STUPID’ things were…after said runs I put my keys in the freezer, couldn’t figure out how to work the shower, and sounded like I had an entire bottle of Tequila allllllll by myself.

On top of that, after the run I’d pass out on the couch. Not a fall and hit your head pass out, but the can’t keep your eyes open type of passing out. It was horrible. My little kids were home and here is a passed out mom, who put her keys in the freezer, stunk because she couldn’t figure out how to work the shower, and sounded like she was 3 sheets to the wind.

A while later, after my Introduction to the Monster, I found out, (during my ‘Major Book Retailor M.S. research trip’….. mentioned in a previous post), that Heat and M.S. don’t play well together. This M.S. induced heat intolerance is called Uhthoff’s Phenomenon. Wow…..way to sort of RUIN one of the few things I enjoyed doing. It isn’t like we have a “cool time of day” here. We’re are on our 4th treadmill since my M.S. epiphany. The garage does not have air conditioning so I still have the SAME heat problem…..just without the pesky sun part. My husband and son use the Damn thing more than I do and No, an electric fan does not help…..all it does is move around the HOT air.

M.S. doesn’t play nice in the heat. The heat sort of puts your brain on the fritz. See the electrical signals – the ‘do this now messages’ in a Healthy Brain, sort of skip along happily over nerve pathways. Kind of like playing hop scotch……before you add a rock to the mix, you hop from one square to the next. Easy Peasy. Nice and smooth….a quick hop hop hop.

In an M.S. Brain, lots of rocks have been tossed on your hop scotch board. You can’t easily hop from one square to the next. You are hopping all over the board, attempting to avoid the squares that contain rocks. You try to clear two boxes in a row, wobble, lose your footing, and fall. Not Fun.

On top of the….let’s admit it…..SAAAAD game of hop scotch, adding a little heat moves the game from the sidewalk to the wet, ceramic tile in the kitchen…….and you’re playing barefoot.

M.S. strips the myelin off of nerve cells in the brain. The ‘do this now messages’ are interrupted, slowed, staggered, or sometimes stopped all together. The ‘do this now message’ in a Heathy Brain sounds like this “lift left leg, lever it forward 2 feet, lower it to the ground, transfer weight, repeat same process with right leg”

The same ‘do this now message’ in an M.S. brain (that is negatively affected by the heat) sounds something like this “lift lt eg, lev r t forwa d………2 t, lowe …to h gr..nd, ansfe….eigh…t, r..eat same pr..es. ith………ig..eg”. LOLOL…..Yeah, try to walk a straight line with that.

My advice…..if you care to listen, is to find and stay inside of a building or car with……oh……so…..nice and icy air conditioning. If that isn’t available, get in a pool. Even a kiddie pool. Prop an umbrella over your head, wear dark sunglasses, lay back in the water, and just chill.

If those options aren’t within reach there is a wide array of personal cooling devices available:

Evaporative Cooling Towels –

Cooling Vest using some type of cooling pack technology – they have rave reviews but are on the expensive side. Anywhere from $100 USD to almost $400 USD……..said to be worth the cost if you are traveling and cooled areas are not available

Cooling Vest using evaporation technology – very effective. Uses water to jump start the cooling process. Best for individuals who are already very active outdoors.

Cooling Wraps and Cooling Hats using evaporation technology – very effective. I own a couple of the cooling wraps (the size of a small scarf). They are dipped in water, wrung out, and draped across the neck or head…etc. They stay cool for about an hour. Just enough to cool off after light outdoor activity.

There are many, many, brands on the market. Just search “Cooling Vests for Multiple Sclerosis” and you will see options at all price ranges.

I’m not listing manufacturers because there are so many. I haven’t tested these products from multiple manufacturers, so it isn’t right for me to recommend one brand over the other.

Yes….1 hour and 25 minutes until the WEEKEND ! Just have to survive that laaaaaaast little bit. I am at lunch right now. Took it late because I was right in the middle of a project and didn’t want to lose the momentum. So, now I just have to lay low….basically hide in my cubicle….type quietly….ignore the phone…and maybe I’ll be invisible. Uggh, I am just TIIIIIIIRED. Brain tired, body tired, totally tired. M.S. will do that to you.

That M.S. fatigue is a REAL thing. I figure, it’s because our brains are trying to create and use new pathways to complete tasks that now scarred/dead areas used to do. I mean, aren’t a lot of those pathways created while we are still hooked to our moms by the umbilical cord? Isn’t that what our brains are doing for the first few years of our life? Our brains are mapping areas for language, math, speech, and every other function our bodies carry out everyday. Our brain is the master puppeteer. “Be hungry, be happy, be angry, blink, breathe, pump the heart, lift left leg….put left leg down….repeat with right leg….move forward, laugh, cry, think, pee, reason, add, divide, run, play music, be artistic, yawn, hiccup…….etc. etc. etc.

People with M.S. end up with damage to areas of the brain that help get the above tasks done. Some people have a hard time walking, speaking, reasoning, talking. The possibilities for problem issues are huge. Now, to continue living and functioning, our brains try to fix themselves. Sometimes it is quick, and very successful. The longer you have M.S. though, the slower the repair gets…and you can only try to fix the same spots so many times. All that fixing is EXHAUSTING.

That is my take at least. I mean, if I didn’t take 2 different medicines to keep me awake and able to concentrate during the day I’d be a pile of pudding. I mean I’d be flat out on the couch not moving for most of the day.

Before I knew I had M.S., somewhere between 2001 and 2004, I’d get up, take my elementary school children to school, pick up my carpool work buddy, go run on the beach, go to work, leave work and get the kids, drop of said carpool work buddy, and go home. After getting home I would immediately try to get a Really, Really, Really quick dinner together. Hot Dogs and macaroni and cheese, spaghetti noodles with sauce or butter if we didn’t have sauce, soup and grilled cheese…..easy, quick food. I’d play 5 minutes of fetch with Abagail Saree Sweet (the worlds most AWESOME, LOVING, PERFECT, Chocolate Lab). – I miss my Abbsie Wabbsie….but she is in Doggie Heaven now – . I’d feed the cats and Miss Wabbsie. Then I would go back to the room and promptly fall asleep by 6:30 p.m. I was soooooo tired that I could sleep until the next morning. I wouldn’t do that very often though. I would force myself to get up around 8:00 or 8:30, bathe the kids, and get my babies ready for bed. I’d get the kids clothes, my work clothes and my running clothes set out for the next day.

That was it…..It was all I could do. The husband wasn’t happy of course……I was ALWAYS tired. I had to make sure everyone ate….bathed….and went to bed. That was all my tired self could handle. I couldn’t even sit on the couch when I came home. I would be out within 10 minutes.

UGGH…..TIRED. Well now I FEEL less tired. My alertness is caused by medicine, but shit….I’ll take that over sleeping my life away.

Yeah, If you haven’t tried it before….apples and peanut butter….AMAZING. I think I ate that for breakfast everyday for 2 years straight.

lol…..that was back when I was a really ‘Healthy M.S. Patient’ though. Yeah, back when I was still running 35 miles a week and working out 5 days a week. Way back when there was such a tiny, tiny, tiny, percent of body fat……I was sooooo skinny. But I was totally fit. Muscular and skinny. OH those were the days !!!!! lolol….right about 13 years ago. My 30’s were the best.

Back to REALITY.

I don’t eat nearly enough apples anymore…..and since I don’t eat apples…..I don’t eat peanut butter. Beautiful, yummy, peanut butter. The best is the stuff that you have to stir. The real stuff that isn’t already smooth because of all the weird stuff in it. The real stuff has character, a little too soft, not very sweet, EXCELLENT with a drizzle of honey, and of course the perfect partner to apples. Any apples. I really like it with Granny Smiths. It is just delicious. Peanut Butter is also fabulous with Marshmallow Fluff. MMMMMMM Fluffer Nutters………Now I am hungry.

When you have M.S. usually no matter how healthy you are (like I used to be) you have to take some kind of medicine. In my case it is Disease Modifying Medication, medicine for depression, seizure medication, medication so I can concentrate at the job I still need, another so my weird m.s. related wacked out Narcolepsy type issue doesn’t have me zombie-ing out approx. 4 times a day, then the medicine that keeps the neuropathy in my forearms in check. That stuff hurts so bad that I can’t type. Used to bring me to tears. There are also the Biotin and ALA that help prevent Brain Atrophy, D3 and B12 because I am deficient……yadda, yadda, yadda, etc. etc. etc. There are more vitamin supplements I am supposed to take…but I get sick of taking it all. I’m on strike…..I’m only good with the main medications…..any med after the neuropathy stuff gets missed every so often. Well maybe I miss it more than every so often…..I’m sooooooo not good at taking those. UGGH. These damn things become another meal. Who needs another meal.

Anyway, I think I need more Apples and Peanut Butter……and I’ll try to be better taking that other meal everyday.

Well folks, I believe I was diagnosed with M.S. on May 25th 2004. The first time I saw a Neurologist it was…..”you most probably have M.S. ……well No…..You Definitely Have M.S……I am diagnosing you with Multiple Sclerosis.” This was with only 2 MRIs under my belt. I hadn’t had a lumbar puncture yet. Just 2 MRI visits. 1 that the Doctor treating my stress fracture made me get….because of my offhand question about pinched nerves and shocks down my back when I bent my neck. The other set my new Neuro sent me for …..before he even saw me.

I am a pragmatic sort. I tend to be a glass is 55% full, individaul. I hover juuuuuuuust above ‘Oh Sh*t this Sucks’ and… sort of….at ‘Well Damn, at least I don’t have to make a Goodbye video for my kids’. As I mentioned in a previous post, I was actually relieved to be diagnosed with M.S. Considering all of the other Very Scary things out there, I got the better end of the bargin. If something has to be wrong with my BRAIN…..I’d rather it be this, than anything else. I’d rather be Alive and possibly in a Wheelchair, than Walking but soon Dead.

Mind you, this doesn’t mean that I don’t feel sorry for myself every so often. Those little pitty parties are usually followed by loads of guilt and self loathing when I remember there are people out there who ARE recording ‘Goodbye Videos for their kids’. Who am I to feel sorry for myself when others have it soooooo much worse off than I do?

I do though, allow myself a few minutes of ‘oh woe is me’ time every so often. I only allow a few minutes of it. I then promptly kick myself in the A** and remember the people making those heart wrenching videos.

The universe, such as it is, has allowed me to watch my (at my diagnosis) elementary school children…..grow into well adjusted adults that are hardworking, contributing members of society. My youngest is now a Senior in College. My daughter graduated a little more than a year ago, and moved half a country away for a good job. We miss each other terribly. I am very fortunate to have a wonderful relationship with my children. They never gave me any trouble at all and they grew up to be very caring individuals. (end of mom’s sappy brag).

Anyway…..flashback about 27ish years……It was my 16th birthday I think…..or somewhere close to it. I still remember what I was wearing. It was a pea green pair of BONGO jeans and a long sleeve, airy, floral button up shirt. My hair was long and had that “Big Bangs” thing that was still hanging around from the 80’s. I was living in Merritt Island Florida with my mom and baby brother. I believe my boyfriend had just left my apartment. I was walking towards the hallway but stopped and turned around to watch the TV. I think it was the news or one of those 60 minutes type shows.

They were talking about Annette Funicello. It had to be in 1992 because that was when I turned 16. As the story ended on TV, I turned to my mom and offhandedly said…..”I’m going to end up with that….that is what I will die from”. I can remember my mom saying ‘Why….why do you think that?’ and my nonchalant answer was ‘Oh I don’t know, just because….that’s what it will be’. The story had been about Annette coming out about having Multiple Sclerosis.

I didn’t think about that moment again until I told my mom I had MS. My moms jaw dropped and she reminded me of my out of the blue comment.

Kind of strange…..off putting….and precognizant. I had said that to my mom…never really even thinking about whether I was being serious or not. Strange….all I can think is that maybe I had been experiencing a few of the things Annette had mentioned dealing with during her time with M.S. Maybe I was jokingly flinging that comment out there as a half hearted explanation for some of the things I had been feeling. I guess I won’t ever really remember. Mind you I was diagnosed 12 years after my 16th bday so a bit of time had passed since my comment to mom.

Anyway….a week or so after my diagnosis I started taking one of those lovely things called Disease Modifying Medication…Betaseron….lovely every other day shots. Lots of Flu symptoms until I got smart and took Advil right before I did the shot…..which I did right before bed. Took 6 weeks to get past feeling like I had the flu, body aches, chills …etc. Also a good thing that I am not afraid of needles. It isn’t fun, but I do it.

But as with many people who have MS. That type of medication is only one of many that we have to take. We have to fight fatigue, D3 deficiency, B12 deficiency…..nerve pain….muscle spasms….etc. ………More Medication to Go Around….

Soooooo….the appointment with the doctor that would become my lifeline to sanity came quickly. He sent me downstairs to the imaging office for a full set of MRIs. He wanted the brain, cervical spine, and T-Spine, both with and without contrast. That was an interesting procedure. It is one thing having your head and neck in an MRI machine for say 10 minutes for both with and without contrast. It is a Totally Different matter being in there for approximately an hour. Starting with your brain, moving to your neck, and then moving fully into the machine for your spine……then do it all again once they shoot you up with dye.

UGGH……Please before you get one of these Loooooong MRIs…go pee. Laying on your back for an extended period of time tends to make you want to pee. You can’t cross your legs while you are in there either. 😉 Yet, the worst part is that you cannot move. Really, CANNOT MOVE for about an hour. No scratching your nose, no sneezing, no clearing your throat, no moving your head….etc. etc.

Your butt or I should say your tailbone (if you are skinny-ish) pushes against the table, in the same position, for what seems like eternity. After a while it starts to ache. NO FUN. I’m lucky too since I am not claustrophobic. I actually find the very loud banging of the machine as it does it’s thing, relaxing.

There is a problem there too. I tend to fall asleep. Yeah, that is a no no too. I guess people twitch in their sleep quite a bit. I’ve gotten the ..tap tap tap on the microphone “Ahem, Ms. Morrison, you need to stay awake please. No napping.”

So, moving on. I go back upstairs with my newly developed very large MRI scans. There were only a few pages, big pages, but it seemed like there should be waaaaay more with as long as the MRI took. Since it was a rush job, the radiologist just sent up the interesting ones first.

Wow……The doc takes time to look over the pictures then comes into the room. He says that just by looking at my scans, it is very probable that I have Multiple Sclerosis. He then says, no, I am diagnosing you with MS. We may do a spinal tap later to confirm it, but you have it.

He picks up the first set of pictures and points me to my Cervical region where there is what looks like a golf ball in the middle of my neck. Lesions on my spinal cord…… Neat-o. Then he brings out the star of the show. There is my brain….my poor little brain… kinda gray with a squiggly surface; but, there are these white spots……Many Many Many white spots, scattered around my brain. Not just in one spot, but everywhere. It looked like a painter took his brush full of white paint, pulled the bristles back with one hand, and slowly let them go so little splatters of white paint were flung everywhere. Also, my Ventricles were surrounded by lots of white area.

Then doc then told me that I had the ventricles of a 70 year old. Wow…. I was only 28 years old. I was also told that by the look of my brain, I had had MS since I was probably in my early 20’s, or possibly in my teens….and thinking back….I can remember a few time periods where I was experiencing weird stuff that I now know can be MS symptoms. So I am guessing at about 14 or 15 was when it started.

Anyway, the doctor said that I needed to start treatment right away. See my MS started with my legs being affected, not my eyes. In fact I have never had issues with my vision. With the legs being affected first, the concern was that I would have a less favorable prognosis. He then told me that if I didn’t start treatment right away, that I would be in a wheelchair by the time I was 43.

Picking up where we left off….I wen’t to Dr. Rivera’s for the last check on my tibial stress fracture. This was late May 2004. Woo Hoo ! The doc said I was free to run as much as I wanted to, as long as I did it smartly.

As I got up to leave, almost as an afterthought, I said ” Oh yeah, what does it mean when I get a shock down my back when I bend my neck? Do I have a pinched nerve?” The look on Dr. Rivera’s face was priceless, his usual smile disappeared. He was quiet for what felt like minutes…..it was probably only seconds though. He stumbled for words and finally said, “I’m sending you next door to the imaging facility to get an MRI. I’m going to call because I want it done today.

That didn’t sound promising…… 20 minutes later I was in an MRI tube.

Okay, so I went back to the Dr. the next day. Actually first I went to the imaging facility so I could pick up my Radiologists report, which I then delivered to my Dr. post haste.

YES, of course I opened the envelope and read the report. It is my brain after all, and I did pay for the procedure. The MRI was done – with and without – contrast (dye) on my Cervical spine. The report said that there were “Areas of non-specific demyelination .” Then some time later in the report there was something about a “disease process”. LOVELY !!

So the doc reads the report. I ask what it is. With that same sad look (from the previous appt.) he said he had his “suspicions”, but that he wouldn’t tell me. He would leave that to the Neurologist, with whom he was making me an appointment.

LOVELY, AGAIN. So his office made me an appointment 6 WEEKS from that date with some local Neuro. “UHHHHH, NO. That is not going to work for me. I’m not going to go 6 weeks without knowing what is wrong with me. That was the first thing that crossed my mind. (I mean hell, that is 5 weeks, 6 days, and 23 hours more GOOGLE searching time than I could stand to put myself through). I nicely took the referral and promptly went home and pulled out the phonebook. (Yes we still had phonebooks delivered to our house WAAAAAAAY back then 🙂 ) I was going to find a Neurologist to take me NOW, I wasn’t going to be satisfied with 6, 5, 4, 3, or even 2 weeks away.

So I lucked out and found a Neurologist that was new to the area and was accepting patients. I was able to get in 2 days later. YAAAAAY !

I miss him, I wish he were still seeing patients here in FL. I get too upset thinking about it. I am on Neuro #2 since I had to stop seeing Dr. Sealy. I fired the first one (after Dr. Sealy) becasuse: #1. his front office staff could not get out of their own damn way. (yes fired, I paid them, so I consider it firing) #2. he said to me “Oh, I’ve never had a patient on that medication before.” – obviously NOT what I needed to hear. Obviously he hadn’t had many MS patients since this medicine is one of the VERY FEW immune modulator drugs that treat it. #3. he tried to sell me the book he wrote that taught simple communication techniques for stroke victims and the people who care for them. “HELLO, I’m here to be treated for a condition that could paralyze me BEFORE I get to the average Stroke age demographic.”

Uggh. So next post… ‘Getting slapped with the UGLY stick of My New Reality’. —

Yes, you saw that right. I said “Thank You Universe !!!” It’s not as odd as it sounds. When faced with some possible outcomes, one of which is Multiple Sclerosis and another is a Brain Tumor….I said bring on the M.S. I mean, I can trick out a wheelchair, but I cannot come back from the dead. (not that all brain tumors are fatal, but they sure as hell are scarier in my mind than M.S. Also, there may have been other conditions that could have caused the problems I was having, but those two were the ones that STUCK OUT at me.

I was diagnosed in May of 2004. At that time, my Neurologist believed that I probably had M.S. for years prior to my diagnosis. At least since my early 20’s. I turned 28 two months before I found out I had Multiple Sclerosis.

Yaaaaaaay, goodie, now I have an explanation for all those odd things that I was experiencing.

Something to note about me, I like denial. A healthy dose of denial helps me stay sane. Some days reality just gets to be too much and I can either take it all in and push back out what I want to deal with right then, or take it all in and become overwhelmed and fall apart. So, denial allows me to dump some of my mental trash into a drawer, pick out the stuff I can deal with at that moment, and close it until I’m ready to do some cleaning.

Let’s start at the beginning shall we. In 2003 I ran 35 miles a week and worked out at the gym 5 days a week. I had a full time job, a husband, two children, 2 cats, and 1 dog. I was a busy, busy girl. I also thought I was healthy.

I was training for a half marathon that was going to be the weekend after Thanksgiving 2004. It was the Space Coast Marathon and Half Marathon in Cocoa Florida. I regularly ran 4 to 6 days a week, with one 13 mile run on the weekend.

All was on track, it was a few weeks before the race…..and I did something stupid. I tried to speed up aaaaaaand added a few more miles on to my weekly runs.

Not a good thing to do. I ended up with a stress fracture in my….left….I think it was my left…tibia. It has been a looong time…memory is a bit foggy on the particulars. I thought it was just bad shin splints….but soon accepted the fact that shin splints don’t bring you to tears before you hit the two mile mark. I was devastated. It sucked. I went and picked up my race packet and shirt and quietly stuffed it in my race shirt collection bag, never to be worn. If you don’t run it….you don’t wear it! My family physician sent me to a local internist, Dr. Antonio Rivera.

He said that I shouldn’t run or walk for exercise for a while, but that I could ride a bicycle. The pain wasn’t bad unless I was running or doing a lot of walking. I was told that it was probably a bad case of shin splints…I was given nsaids and a follow up appointment. At that follow up the pain was still the same so the Dr. scheduled a bone scan.

Next morning I went to the hospital to have the scan. “Sit up on that that table” I was told. Now it was a tall table and I’m only 5 ft. 1in. on a good posture day. A few minutes later the scan was done . As I went to hop off the table a tech rushed out….”hold on, hold on, I’ll help you down”. That didn’t sound promising.

Needless to say, I had a Baaaaaaad stress fracture. I wasn’t even allowed to walk once the tech picked me up off the table. He sat me in a wheel chair. WTF. I sat in that thing until they had my leg totally boxed up from toes to knees in some funky brace. I was told to use crutches too. DAMN IT !!! No walking on it at all, even with the brace for , I think it was something like 14 days, then went back for a recheck.

Yaaaay, I got to lose the crutches, but had to keep the stupid brace…for MONTHS. This began October 2003 and I was still being treated by the Dr. in May 2004. That is a LOOOOOOOONG time to go without some serious running.

Well while I had been off my leg, I noticed that when I bent my head forward I had a neat feeling shock run down my spine . It felt neat, but I knew something was wrong. I figured I had a problem with a disc in my neck or a pinched nerve. So I went about life as normal.

The denial thing I was talking about earlier…It had already come in to play. It was allowing me to deny the little odd things I had been experiencing for over a year. The shock thing was just the newest in a line of odd things that I was experiencing. Those little things began a long time before my tibia injury. Denial can be a good thing, but it can also be a B*tch………….

Sooooooo, who knew? Really? I never would have guessed. The BIG M.S. Once again , WOW !!!

Looking at the big MRI films the Neurologist is showing you….. That weird feeling, where you get hot, then cold, then hot again…….where your hearing temporarily fuzzes out and all you hear is the…”wah wah wawa wah” of Charlie Brown’s teacher. You know…. ‘It’s the Great Pumpkin Charlie Brown.’ You snap back to the present and….”Can you please repeat that Dr.?”

Words like Demyelination, Scleroses, ventricles, neurological deficits, disability, disease modifying medication, lumbar puncture, and Oligodendrocytes….float through the air…..bobbing up and down in front of your face.

Once again……WOW !!!

So, the new To Do list:

Look up Oligodendrocytes and Myelin

…..”proteins…fatty layer”…?

What does Demyelination mean?

…..sh*t, sh*t, sh*t….

Google the HELL out of Multiple Sclerosis

!!! DAMN IT !!!

Get a stiff drink…..heavy on the Vodka

…..Feel a little sorry for yourself…..

Start new ‘disease modifying medication’

…..Cry a little…..OUCH…..Damn It !!!…

Go to a MAJOR book retailer. Order a Grande Cafe Mocha with extra whipped cream and research M.S. some more……WAAAAAAAAY more than you probably should